Monthly Archives: October 2018

A special day to remember

The annual Remembrance Day enables families, volunteers and staff to come together to remember all the special children who have died.

For many families, Remembrance Day is an opportunity to honour and remember their child in a supported space with others who can understand some of their journey.

More than 150 families attended the service at the Malvern Town Hall. Parents and siblings were involved in the service through the sharing of reflections, blessings and through song.

After the service, all families were invited back to Very Special Kids lawn for some craft activities, planting pots and a delicious feast!

Special thanks to Stonnington Council for the use of Malvern Town Hall, as well as the many staff and volunteers who help make such an important day happen.

Staying on track and raising funds

On Sunday 21 October the Right on Track charity event run by Race Party was held in Hawthorn East. This event was an opportunity to bring the community together in a fun environment to support Very Special Kids.

Over the course of eight hours, there were more than 60 drivers racing around Albert Park slot car race track creating a day of healthy competition and family fun.

Special guest appearances on the day included Optimus Prime, Wonder Woman and Iron Man, while guests were also treated to amazing feats of magic by Anthony De Masi.

Local neighbours in the area were entertained with dancing superheroes, a gourmet BBQ and the Very Special Kids Giant Piggy Bank all front and centre on Camberwell Road.

Racers that were not competing in the Albert Park room danced the day away while trying out the Disco Racing in the Monaco track room.

Thank you to everyone who participated and helped Very Special Kids raise much needed funds in one very special race day. It was an amazing day with super heroes from all worlds supporting the great work and efforts of Very Special Kids!

Holidaying with a child with special needs

Destination. Tick. Flights. Tick. Accommodation. Tick.

At long last your family is off on a well-deserved holiday. But what makes the difference between an experience your whole family will cherish forever and a potential disaster that might scare you off ever taking a holiday again?

Planning, planning and more planning.

Travelling with a child with special needs can be tricky but there is no reason why together you can’t build a love of travel and adventure that grows with every holiday experience.

The following tips have been gathered from parents who travel with children with special needs:

Before you leave.

Build excitement so the travel becomes a positive thing to do as a family and get your child comfortable with the idea that unfamiliar can be fun too!

But…if it’s too different to their day to day it can become scary and they won’t want to do it. Talk endlessly about where you’re going. Read books or create social stories about the places you’re going and the things you’ll be doing. Google the hotel where you’ll be staying and look at pictures of the rooms together. A special toy or travel accessory bought just for the trip can add to the excitement.

Sometimes it’s all in the little details.

Think about what things keep your child comfortable at home and take them with you. Do they need a special blanket, a night light, a favourite pillow, a favourite book, or special sleep toys to ensure they feel comfortable while away from home?

Think about the time of day you leave and arrive. Plan breaks on the journey if possible. Pack loads of snacks, especially those that are slow to consume, like sultanas. Colouring books and sticker books also keep them occupied for a while. Remember to charge up the electronic devices and download lots of TV shows, audio books, music or movies.

On the day of travel.

Often the worst part of travel is the plane and/or airport. Tell the airline in advance that you are travelling with a child with special needs and find out what services they offer.

Take advantage of on-line checking, so you avoid the queues. Find out what else you are entitled to and don’t be afraid to ask!

Request to board first, ask for seats near the bathrooms, and request your meals get delivered first/early.

If you’re flying for the first time you’ll need to prepare your children for the noise of the engines starting up and the bump on the landing. If you have time you might want to visit the airport in advance of your trip.

You might describe how flying can feel a little funny for your ears. Pack lots of things to suck on and chew on. Some families never fly without noise cancelling headphones.

If you find it tricky to settle your children in their seats, consider making a visual ‘seating map’ with family photos to show where everyone is sitting on the plane. If necessary put the pictures on velcro and stick them to the plane seats before your children get seated to avoid any last minute squabbles.

Don’t be afraid to ask for help. One mum remembers asking for assistance to a customs officer to use the facial recognition equipment. With his help, the adolescent was able to use the equipment just like her siblings which allowed her to feel more independent and empowered in her travel.

If you’re taking medications, think about how they need to be stored. Do they need to be properly labelled, will there be any issues at customs? Would it be helpful to travel with a letter from your doctor? Have a look at the useful video on the Department of Health – Therapeutic Goods Administration website for further information.

If you are travelling with a wheelchair, there are a few tips for making life a little easier (Source: Family Travel Magazine, Issue 1, 2018); know the dimensions and weight of your wheelchair when booking flights, allow additional time for check-in and security, write instructions for operating the wheelchair and laminate and attach them to the chair to help the baggage handlers, take off any removable items from the chair and pack separately and bubble wrap any fragile items on the chair to avoid damage.

 Once there.

Even though you’d love to just relax and hang out, creating structure for your child will help them cope with the unfamiliarity.

A visual schedule for each days’ activities may help. Keep it simple in the beginning, then build it up once you get into your new holiday routine. Or alternatively stick with the activities that you know your child loves.

Following the normal sleep routine keeps them refreshed and ready to go again the next day. If you have to negotiate around activities, use the “if then” strategy – “if we go for a walk in the gardens, then we can go to the pool”.

Plan and schedule your activities so that all family members get to do things they love – this might take some dividing and conquering.

For example on Day 1 Mum might take the siblings to the theme park and Dad does something fun but less active with your child with special needs. Then on Day 2 you all go the beach. You’ll need a mix of busy days and days to rest and recoup.

Research where to go to get ‘ordinary’ or’ familiar’ food if your travel involves sampling the local cuisine. Knowing that something familiar is nearby can give your child the confidence to be more adventurous in their eating (for a few days at least!).

And Finally.

Have a back-up plan. Things won’t always go as you had hoped. It happens!

Be flexible even if your child isn’t. If it all goes wrong, implement plan B and then move on.

Try not to let your emotions take over. If you can look past the occasional hiccup, the positives of letting your child see the world (whether that’s overseas or simply a different state or territory) and seeing the world through your child’s eyes are enormously beneficial to everyone. As one seasoned ‘travelling Mum’ said “I’ve found all around the world people welcome my children with open arms and are always willing to help.”

Happy holidays!

If travelling in Australia there are a few handy things to know.

A Master Locksmiths Access Key (MLAK), gives you access to all toilets, Liberty Swings and other facilities fitted with specially designed lock around Australia. Apply for a key here:

Virgin Australia has introduced the Disability Assistant Concession fare, which offers 50% discount on flights for an assistant for all domestic travel.

The National Companion Card provides free or discounted entry to attractions, movies, shows etc for the carer or support worker of a person with a disability. Each state and territory has their own card. Find more at:

Some useful travel resources:

Family Travel Magazine (first edition Winter 2018), has a section on Accessible Travel.

Long stays at Royal Children’s Hospital – how to stay strong

Tips from Very Special Kids parents who have been there.

Bring a sense of home to hospital

  • Take your child’s favourite pillow, blanket and snuggle toy. Sometimes the smell of home can be very comforting in a strange and sterile hospital bed.
  • Take a picture of family members or pets in with you.

What to pack

  • Have overnight bags packed ready on standby for the often unexpected rush to ED.
  • Hospital is freezing so if you can, take your own doona, pillow and plenty of warm socks.


  • Don’t put your frozen food in the patients freezer….it will be thrown out.
  • If you have any dietary requirements you need to cater for yourself.
  • Take prepared food in with you.

Washing Clothes (who knew?)

  • Washing powder and fabric softener is always a must.
  • Get your access card to the 2nd level laundry as soon as you get there and tell them you will hang on to it till you leave.


  • Let the charge nurse know that your child is a VSK kid and ask for the volunteer on that day to come and meet you and your child so you can take a break.
  • Don’t be ashamed to take advantage of volunteers.
  • Organise a team of people to help with household chores back home. They also have volunteers that bring dogs around so keep an eye out for them.

For you

  • Take something that YOU enjoy to pass the quiet times away….a book, craft, etc.
  • Meet friends in the café rather than on the ward.


  • Don’t forget to use your RCH concession for the parking, as it limits your fee to $10 a day.


  • The RCH will provide all continence products except for baby wipes.

Talking to doctors

  • Take a note book so there are no issues or misunderstandings. You do get very sleep deprived and can forget little things that can be important.
  • Don’t be afraid to question the doctors.

Fun stuff

  • Get your child out of their room as often as possible and there are play rooms at the entry to each ward.
  • The teachers at the RCH will liaise with your child’s own teachers to support the continued learning in his or her own classroom.
  • Even though each room has its own TV, take an iPad for the kids.
  • Write both yours and your husband/partner’s name on the whiteboard with your mobile numbers, siblings names and pets, their like and dislikes as this helps new nursing staff get to know you all.

Other helpful stuff

  • Use Social Workers, Play Therapists and anyone else that can make life easier for you.
  • If you are eligible, use support organisations like Ronald McDonald House, Brainwave and TLC for Kids. They are amazing sources of extra support during long stays. They can help with out of hospital accommodation for the other parent and siblings. Brainwave also do amazing “emergency care packs” for children whose parent may have not had time to pack the essentials for a hospital stay.

The need for more children’s hospices

Today is World Hospice and Palliative Care Day and is a chance for Very Special Kids and the only other two children’s hospices to highlight their unique support services in the hope of reaching more Australian families who have a child with a life-limiting illness.

Very Special Kids Hospice in Victoria, Hummingbird House in Queensland and Bear Cottage in Sydney provide 24 hour specialist care for children with complex care needs with a team of qualified doctors, nurses, carers and trained volunteers. Families who have a child with a life-limiting condition, can access these free-of-charge services for planned and emergency respite, as well as end-of-life care.

IMG_20170119_184516Three-year-old Breana Zois from Victoria was diagnosed with DiGeorge Syndrome only days after she was born and had her first open heart surgery shortly after.

Breana’s mother Nicole is her 24-hour carer, and father Spiros and three other young siblings help where they can but sometimes need a break from the demanding nature of Breana’s condition.

“Very Special Kids is vital for our wellbeing and in assisting us to care for Breana. It’s the one place we can confidently leave Breana and know she will be well looked after“ said Spiros.

When it came time for Queensland parents Brad and Mel Cooper to say goodbye to their adored two-year-old son Cody, they knew they wanted him to receive care at the end of his life at Hummingbird House. cody

“When Cody died, the team took away some of our sadness and grief. They took care of us and we felt like we were home. Everyone thought ahead to what we would need, and made us all feel so comfortable” said Mel.

The emotional, physical and financial struggle for families can be immense and without specialised support services, they may have nowhere else to turn.

Very Special Kids Chief Executive Officer Michael Wasley says “we still have a long way to go for hospice care in Australia. We are one of three children’s hospices in the country, whereas if you compare that to the 52 in the UK, it’s a huge difference. There’s still a significant unmet need of families we could be reaching.”

Introducing our new Family Support Practitioners – Roni and Damienne

Roni is often seen around the office with her very large but gorgeous dog Billie. Ronnie is a Social Worker and is currently completing her Masters in Clinical Family Therapy.

Before Very Special Kids, Roni spent several years working in the Palliative Care and Trauma Units in hospitals. It’s highly likely your child will have their face painted by Roni at some stage as she is also extremely talented in this area!

On the weekends you’ll find her walking on the beach with her dog, having a long breakfast and roller-skating – not all at the same time!

 Damienne has a Graduate Diploma in Rehabilitation Counselling and has spent the last 7 years working as a Behavioural Therapist in early intervention with young children with Autism Spectrum Disorder, in schools, family homes and clinics.

Prior to that Damienne spent many years in the corporate and management consulting world but realised that people not numbers were her passion!

Damienne spends most of her weekends on the sidelines of various sporting fields for one of her 3 boys and when not kicking a ball around loves to get crafty or head out into nature.